At every clinical conference, investigators and the pharmaceutical industry are consistent about recognizing the importance of clinical trial participants. Without them, advancements would not be possible and expressing gratitude is an important value. However, designing a trial experience that serves patients’ needs and supports their journey is also an increasing priority.

This is a topic close to my heart, as July 12th of this year marked two years since I entered into a clinical trial for a new therapy for alopecia areata, an autoimmune condition I have lived with since I was ten years old. Even with my experience supporting pharmaceutical products at various phases of the product lifecycle (including pre-launch), putting on the “patient” hat has brought new depth to my understanding of clinical trials. But even as a someone with experience in this industry, being a participant sparked quite a few curiosities, including:

  1. Why are there so many different types of studies for one product?

    If you go to ClinicalTrials.gov and look up the treatment I am currently taking, you’ll see that there are 20+ studies listed. I understand the purpose of my own study and how it fits into the larger puzzle, but what are the others designed to do – and why was I put into one trial versus some of the others?

  2. Is there a way for my doctors to access my data?

    I visit my trial site regularly to have blood drawn, photos taken, and answer a brief questionnaire. During some visits, they also do an EKG. I know that they do this to monitor my progress and would let me know if anything in my labs turned up abnormal… but is it also possible to send that data to my doctors so they can review it when making recommendations about my health?

  3. What happens if I miss a dose?

    In my study, I have to take a twice-daily pill. I have alarms set to remind me; however, sometimes I’m out without my bottle when the alarm sounds, and I don’t always remember to take the dose when I get home. Would I be able to continue in the trial if that happens?

  4. Can I still participate if I move further away from the trial site?

    When I decided to make the move from Pennsylvania to New York, I wondered – would I have to trade off my newly grown hair for the once-in-a-lifetime opportunity to live in a new city? The answer was no… but this was still a big point of anxiety for me until I had the conversation with my trial coordinator and learned about how they support patients coming in from cities even further away than New York.

  5. Will I be notified once the results of my specific study are published?

    Having spent time being (100% willingly) poked, prodded, and photographed, I’d appreciate the opportunity to read through the findings, ideally in the form of an easy to read one-pager with the key data points charted out and clear headlines that summarize the main conclusions.

But, I think the most important is…

  1. What questions or concerns do the thousands of other patients who volunteered for one of these studies have?

    As a market researcher, I have a passion for learning about other peoples’ experiences. This is no exception. And, it’s something I feel that manufacturers should strive to understand as they are designing and running these clinical trials because ultimately, they are for the benefit of the patient.

At HRW, my colleagues and I are firm believers that listening to the patient voice is a critical element for manufacturers in the success of their trials, brands, and communications. We know from experience that patients may not always voice all of their thoughts and concerns directly with HCPs. Thus, accessing the patient reality when optimizing clinical trial design and participation requires us to speak with patients directly, in order to fully understand the questions they have, especially those that can “make or break” participation and compliance.

Looking at my own questions, two have a direct impact on my ability to participate in the trial. As someone working in healthcare, I’m definitely on the more activated and engaged end of the patient spectrum – but what about patients who are less health literate or engaged in their care, or those with logistical challenges that could self-eliminate from participation? It is essential to uncover the questions and barriers from patients at the outset, so that manufacturers can work on solutions proactively to foster successful recruitment and completion of studies.

At HRW, we have a wealth of techniques for drawing these types of insights out of patients. Further, our HRW Shift team of behavioural scientists can help better understand the biases and barriers impacting your patients. We leverage all of this to make strategic recommendations about how to influence trial enrollment and completion.

If you’re looking to conduct patient research in support of designing a clinical trial and would like to learn more about these offerings, we’d love to chat! Please don’t hesitate to reach out on patientpanorama@hrwhealthcare.com


By Melissa Reinbold

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